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Involving people with communication disability in participatory research: the Friendship and Aphasia project

By Carole Pound and Cressida Laywood

The Friendship and Aphasia project explored definitions and experiences of friendship for working-aged younger people who have aphasia. Aphasia is a communication disability affecting the ability to use and understand spoken and written language. It also has profound impacts on the ability to work, to take part in leisure and life and to develop and sustain relationships. Although there is growing interest in social support and participation as an aspect of health and wellbeing for people living with long term conditions, friendship is a surprisingly neglected area of research.

The project team included eight people who have aphasia and a PhD research student. Together the team:

prioritised topics and questions for the research

designed the project and materials

ran and evaluated a Friendship and Aphasia storytelling event

worked together to understand and interpret interview data from 28 people with aphasia.

We used a participatory action research methodology, involving cycles of reflection, planning and action.

Involvement of advisors / co-researchers with aphasia from the outset and on a long-term basis was critical to the success of the project. For example the original project as envisaged by the researcher had a communication rather than relationship focus.

Monthly meetings ensured co-researchers were regularly involved in decision-making as it unfolded rather than ratifying decisions previously made by the researcher. When we were working intensively on developing presentations and materials we scheduled one-to-one meetings outside the group or contact by Skype/ Facetime to create more opportunity for face-to-face discussion.

Co-researchers with personal experience of aphasia and other stroke related challenges such as mobility and memory impairment ensured practical issues around engaging participants were thoughtfully considered throughout. This included designing accessible materials and thinking about how best to engage people with little speech in interviews and storytelling. The advisors with aphasia also systematically advocated for inclusion of people with severe aphasia who are typically excluded from mainstream stroke research due to difficulty participating in interviews and surveys.

An innovative aspect of the project was the team’s decision to develop and run a storytelling event to share and gather experiences of friendship. This was instead of conducting a second wave of researcher led interviews. The event helped us to capture the diversity of individuals’ experience and explore in more depth common themes of friendship and aphasia that had emerged in the one-to-one interviews.

Involvement of co-researchers with impairments of reading, writing and memory posed challenges to discussing abstract theory and sharing complex transcript data. As part of co-analysing piles of verbal data from the research interviews, the group developed a visual mind map of friendship, nicknamed the Forest of Friendship. The branches and twigs of the diagram were based on a thematic analysis of interview data. Together we worked at generating, pruning, re-positioning and re-naming different branches of the diagram to represent our evolving sense making. The diagram/model helped us remember previous discussions and decision-making. It has also acted as a tool for clarifying and disseminating our findings.

A major challenge and frustration for some advisors was that collaborative, academic discussion placed considerable demands on language and memory. This could emphasise the very nature of their impairments and post stroke abilities.

We believe that the involvement of co-researchers with aphasia has led to:

A different research question – how do younger people with aphasia understand and experience friendship?

A different methodological approach – inter-weaving stories from both interviews and learning events rather than a piece of research guided by interviews conducted and analysed by the researcher

A different tone to findings – presenting stories which are not focused primarily on loss and problems but which illustrate diverse, everyday and different aspects of friendship after aphasia

A more action orientated agenda for the research – co-researchers with aphasia have advocated throughout for practical, creative and user-focused outcomes

A more creative approach to making sense of friendship and sharing findings. For example, we used a modern dance sequence to illustrate the anchoring quality of friendships. We also worked with an artist and a poet with personal experience of aphasia to create images and poems for our storytelling event.

Involvement has also had personal benefits. For Carole, the PhD researcher, involvement in the group has helped her:

feel more confident about using alternative research methods

experience the research process as more enjoyable and less lonely

feel more accountable to the community of people with aphasia regarding practical and meaningful project outcomes.

For Cressida, involvement as a co-researcher has meant:

feeling involved in the ‘vision and attitude’ of the research

feeling a sense of purpose and ‘intellectual satisfaction’ (as enjoyed previously in work and study but harder to find now)

thinking more deeply about friendship both personally and in terms of wider issues relating to people with aphasia